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Parents’ decision-making for their foetus or neonate with a severe congenital heart defect

Published online by Cambridge University Press:  19 August 2021

Rebecca K. Delaney Open the ORCID record for Rebecca K. Delaney [Opens in a new window] ,
Nelangi M. Pinto Open the ORCID record for Nelangi M. Pinto [Opens in a new window] ,
Elissa M. Ozanne ,
Heather Brown ,
Louisa A. Stark ,
Melissa H. Watt ,
Michelle Karasawa ,
Angira Patel ,
Mary T. Donofrio  and
Michelle M. Steltzer
...Show all authors
Rebecca K. Delaney
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Nelangi M. Pinto
Affiliation:
Division of Pediatric Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA
Elissa M. Ozanne
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Heather Brown
Affiliation:
Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA
Louisa A. Stark
Affiliation:
Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA Department of Human Genetics, University of Utah, Salt Lake City, UT, USA
Melissa H. Watt
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Michelle Karasawa
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Angira Patel
Affiliation:
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Mary T. Donofrio
Affiliation:
Division of Cardiology, George Washington University, Children’s National Hospital, Washington, DC, USA
Michelle M. Steltzer
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Stephen G. Miller
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA
Susan L. Zickmund
Affiliation:
VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT, USA Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA
Angela Fagerlin*
Affiliation:
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT, USA
*
Author for correspondence: Dr A. Fagerlin, Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Salt Lake City, UT 84108, USA. Tel: +1 (801) 587-0049. E-mail: angie.fagerlin@hsc.utah.edu
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Abstract

Background:

Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families.

Methods:

We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD.

Results:

Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their “gut feeling” to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed.

Conclusion:

This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

Keywords

Congenital heart diseasedecision-makingparentqualitative researchdecision supportcounselling
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 6 , June 2022 , pp. 896 - 903
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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